by: Al Ballesteros
I remember when AIDS started in 1981, forty years ago. Many of us watched in fear for the next several years as the numbers increased and the news of this being a “fatal” illness became all too clear. It was a dark-time as the HIV virus infected tens of thousands of people before anyone knew what it was or how it was transmitted.
Our friends started to get sick and die. In the mid-late 80s, I got involved in activism like many others in the affected communities. I soon became employed in my first job at Being Alive: People with HIV/AIDS Action Coalition in Silver Lake as the Program Director.
In November of 1992 a group of people living with and affected by HIV / AIDS made this beautiful greeting card for newly elected President of the United States Bill Clinton. It was constructed with 4 feet x 8 feet foam core panels and put together on December 1, 1992, World AIDS Day. When assembled it stood 40 feet wide by 8 feet tall. It was signed by and on behalf of thousands of people living with and affected by the disease. This picture of the card is assembled from photographs taken in 1992.
Finger paint was used to help the infants and children living with AIDS sign the card. Many of their caregivers and parents signed next to the infant’s feet and hand prints.
The section of the card with the baby feet and hands was signed at the Los Angeles County Hospital.
The card was mailed to President Clinton in January of 2003. The President acknowledged the gift and said the card would be part of his presidential archives and put in his library after his presidency. Most of the people who I knew who signed the card have already died. There was no help for them despite the pleas for proper research, access to clinical trials and new drugs and access to health care in general.
In fact when President Clinton took office in January 1993, there were 310,680 cumulative cases of AIDS in the United States. There had been 191,824 deaths. Today, about 1.2 million Americans are living with HIV and about 750,000 have died. These numbers are likely under reported.
Robert Dal Porto, Board President of Being Alive wrote the following message on the card: “We have lost too many lives, too many years to AIDS while the White House has sat by and done nothing. You are our hope, please don’t let us down. In the name of those we have lost…” Robert passed from AIDS sometime around 2004/5 and was an activist until the end.
My good friend Sam Raygoza wrote: “Dear Mr. Clinton, Hope is it just another word with no meaning or perhaps the future for us. Do the right thing. Fight AIDS.” Sam died in 1997 from KS. He fought hard to get into clinical trials for KS and ultimately his body was too sick to benefit from the new drug cocktails.
Sam and I together organized trips to Washington DC, here in LA and California to advocate for people with AIDS. He became a board member of AltaMed Health Services when I was Director of HIV Services and made a difference through his work there. He eventually returned to Bakersfield to be with his family during the last months of his life.
Sam, Jose, Orlando, Joaquin, Ron, Simon and I were the initial organizers of the effort and designed the card.
I remember people wanted to sign the panel with the large ribbon. They thought this was the strongest part of the message and the section the President would read: Heal the country and heal people living with HIV/AIDS. Almost 30 years after these messages and 40 years into the AIDS epidemic, we are not healed. The disease has become more entrenched in poor and minority communities and is just as deadly as it was 30 years ago for those with no health care access or those who do not find treatment. There is no talk of a cure and hopes for a vaccine have not materialized and one does not hear these talks any longer.
It might be shocking to some, but in Los Angeles County about 1,500 people become infected annually and there are an estimated 5,000 persons who are infected and do not know it and/or know it and avoid treatment. While in the early days, there was media coverage about the disease in papers and on TV but today there is no longer a sense of urgency. We spent trillions of dollars during the on-going Covid-19 pandemic to test, treat and prevent the disease and to develop and administer a vaccine. If a fraction of this effort could have been implemented over this last 40 years to battle HIV/AIDS, I wonder where we would be.
But why didn’t these investments happen? Did we just take the crumbs of funding given to us because we believed we could get nothing more? What happens from here and what will things look like on the 50th Anniversary of AIDS? Will there be tens of thousands of more infections or will we become more focused and diligent on demanding a renewed response from our community and the government that will finally drive this epidemic out of existence.